TSH whennon Levothyroxin

[Welly73]

Hi, I’ve been feeling exhausted since Christmas and suffering with extreme cold and chilblains. I visited the GP Who took bloods and days the results are in range!

I returned yesterday as I’m still not feeling well and was almost arguing with the nurse practitioner.

My TSH 3.25, I’ve been advised that it should be around 2 from a client who is a GP and she says they should be around 2 when taking Levothyroxin.

I’ve tried searching everywhere to find documents to back this up can anyone help.

A copy of my bloods below.

[Jazzw]

Hi Welly73

It’s a story we hear here many times.

Regarding evidence, this is a good place to start (the info comes from the parent of this site, Thyroid UK): thyroiduk.org/tuk/diagnosis...

In particular, note the part about asking for further tests. It would be useful to know if you have Thyroid antibodies indicative of autoimmune thyroiditis (Hashimoto’s) as if you do, then at some point your thyroid function will fail.

What time of day did you have your blood test? It’s worth knowing (for future reference) that TSH is higher first thing in the morning and lower in the afternoon.

Your folate levels look rather low—is that 2 point something? If so, that’s very low and you’re probably suffering from folate deficiency symptoms. Your B12 is also on the low side.

Your Vitamin D levels are also on the lower side.

[Welly73 in reply to Jazzw]

Hi Jazzw, I had my bloods at 10am but had eaten Breakfast and also taken my meds.

I’m going to call the drs again tomorrow.

Thank you for your help x

[Welly73 in reply to Jazzw]

Hi again, thinking about my blood test I went to the drs I the morning but returned in the afternoon for bloods.

Yes my folate is 2.8

[fuchsia-pink]

I think that proves that "in range" isn't really good enough!

Most of us like our TSH to be under 1 - and our free T4 to be in the top quartile to feel well. You don't have a free T3 reading, but there is room for plenty of growth T4-wise. Also you might feel better with improved vit D, B12 and folate.

[Welly73 in reply to fuchsia-pink]

I feel like I’m banging my head against a brick wall. All I know is I’m struggling and no one is listening. I’m going to call the Drs again at 8am tomorrow morning. Thank you for your help x

[SlowDragon Administrator]

Are you on levothyroxine?

How much and how long on that dose?

New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Aim is to bring a TSH under 2.5

gp-update.co.uk/SM4/Mutable...

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Extremely important to regularly retest folate, B12 and ferritin too (as well as vitamin D)

Vitamin D is probably too low at 55nmol

GP will only prescribe to bring levels to 50nmol.

ouh.nhs.uk/osteoporosis/use...

But improving to around 80nmol or 100nmol may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, you may need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

[Welly73 in reply to SlowDragon]

Hi, I’m currently on 50mg. Started on 25mg two years ago and then was increased last April following a routine blood test. They only do bloods every 12 months.

Thank you so much for all the links and info.

[SlowDragon Administrator in reply to Welly73]

Guidelines state clearly you should have bloods retested 6-8 weeks after each dose increase until bloods are stable and not dropping

If retest bloods shows low levels, dose increases upwards again

This repeats until on full replacement dose of levothyroxine

Post re how to push for dose increase in levothyroxine

healthunlocked.com/thyroidu....

If left on low dose vitamin levels drop and if vitamins are very low TSH tends to drop

[san_ray70 in reply to SlowDragon]

I have been on 125 for ever have been on Levothyroxine for 15 years. Never seen anybody other than my doctor, my symptons do not seem too bad to me. I get aches and pains in various parts but I put that down to age.

[Welly73]

Thank you to everyone who took the time to help me. The Dr had listened to me and had increased my medication by 25g after having a very lengthy chat and me pointing out the guidelines that you lovely people pointed me in.

I also queried my vitD and folate and she’s agreed that I should supplement!

So thank you sooooo much xx